More Puzzle Pieces

Tuesday this week brought two more appointments concerned with handling business related to Dad's passing, one of which was an impromptu visit to the cancer treatment center where Dad received his series of radiation treatments for the brain metastases. Mom had told me that it was the doctor there that Dad had liked so much, and it was also there that Mom and Dad seemed to get the most optimistic assessment of his illness. The doctor was out, but we had a nice conversation with the Nurse Manager, Mr. Cook. These are the nuggets we picked up to add to our detective work about Dad's cancer and its treatment:

• Again, as with other care providers, his frank assessment was that Dad's overall prognosis was very grim. He confirmed the picture that is now so clear to us that lung cancer is simply super-bad news, whether large or small cell (of which Dad had indications of both). He told us lung cancer is the major killer in oncology, and he agreed with our family doctor's statement that prognosis for lung cancer patients really hasn't improved in the last 60 years. He did mention that there are a couple new drugs out there, but given the nature of Dad's particular form of lung cancer, he would not have qualified for any of them. The bottom line is that with lung cancer, even with the best and most timely treatments, there is little that really can be done. The prognosis - regardless of treatment - can only be affected one way or another by a handful of months (especially in Dad's case since his had spread), and with chemo and Dad's various health problems, they would likely have been poor quality months. It just isn't the cancer to have. (All this news was comforting because we don't have to feel much remorse over some of our decisions during treatment; there doesn't have to be wondering if Dad would have made it or lived dramatically longer had we sought a second opinion or been treated elsewhere. However, the concern still lingers that - if this was really the outlook regardless of treatment - why were we not told this explicitly early along in the process? It was only a week before Dad died that we were really told how serious it was by anybody. More clues to this below.)
  
• In our conversation with Mr. Cook, the problem of what I'll call "silos of treatment" seemed to emerge. Warren was charged with handling the brain tumors (we had the choice of Warren, Erie, or Meadville, and Warren was closest and came recommended). They performed Dad's series of 10 radiation treatments. However, while Warren handled that, they had no knowledge of or control over his lung tumor and the biopsy process for that (which was the part that took so long and seemed so leisurely). Consequently, I think there was a disconnect in service and in approach between Warren and Titusville, and I think we would have greatly benefited from having all of his treatment in one place. Warren was indeed optimistic about his treatment, but for them, that only referred to the brain part. Also, he said that their optimism was not curative optimism (which I am not sure we knew), but it was optimism that the treatment would do what it was designed to do, which was to provide palliative care, get the brain tumors under control, and provide some symptom relief. At bottom, I think they did their part and did it well (Dad completed his series of 10 radiation treatments at Warren almost a full month before Titusville even had biopsy results on the lung tumor for us), but they just simply were out of the loop concerning his other assessments and treatment. Given the urgency they displayed with their portion of Dad's treatment, I think I would have felt better if they also had charge of his lung assessment and treatment. Titusville really seemed to drag their feet.
  
• Mr. Cook also seemed to generally mirror our family doctor's concept of only giving information and bad news in small, manageable doses. Similar to our doctor, he said that their approach is to always be as optimistic as possible, and they'll never just come out and say that you've got lung cancer and are in for a shitty time. He said it is easy to overwhelm people both with bad news and too much information/education, so they err on the side of small doses and optimism. If I am really reporting this correctly, it still seems to me that patients are done an extreme disservice withi this sort of approach. Full disclosure and forthrightness seem to be to be most imperative. At the least, doctors should talk to their patients early in the process to find out from them how much information and bad news they want at a time (or at all). Being optimistic is one thing, but keeping patients in the dark or giving them a false sense of the seriousness of their own illness is quite another.
  
• Lastly, he said that Titusville in general is under served in oncology; if I remember him correctly, they don't have any full-time oncology staff, whereas Warren has several oncologists and pathologists and the equipment to treat. Thus, it is likely that another center more suited for oncology work would have been more aggressive with treatment. However, without knowing the "behind the scenes" of Titusville's treatment of Dad, it is hard to say why it seemed that feet were dragging (or if they were actually dragging at all). It could be, he said, that things really did move as quickly as they could have from Titusville's end. And at bottom, given Dad's messy and aggressive form of cancer, he comforted us by saying that the final outcome would not have changed even with more aggressive treatment.
  

In the end, I feel some better that Dad received what was an appropriate but not excessive amount of treatment, which was in keeping with his wishes of no chemo and no cutting. He got a rather noninvasive series of radiation treatments and was spared chemo altogether. And it sounds like - with the combo of his aggressive and erratic cancer that had already spread and his complicating health problems - chemo might not have done much and would have likely made him very sick. Still, Dad told me a few months ago that he wanted to get better so bad, and he showed after his oncology appointment that he was willing to try chemo, so maybe he wasn't as "hands off" regarding treatment as he initially seemed. I think he really was at such a content and happy place in life, and so it grieved him to have that interrupted. He wanted nothing more than to go back to woodworking in his shop, and it grieves me now to think of how good Dad was doing overall - health, happiness, usefulness - when this disease jumped in and took him from us and his own life.

My other thought is that - the more I find out - the more I am still unhappy with the way that information was communicated (or not communicated) to the family about the nature of Dad's cancer. None of the explanations about "not taking away hope" or "being optimistic" have convinced me that it was right or ethical - in my eyes - to withhold (whether intentionally or because we never asked the "right" questions) certain information from us or not give us the option of having full disclosure had we wanted it.